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Shared experience

Managing type 1 diabetes and autism

Jacob’s mum shares how her son’s autism affects his type 1 diabetes management.

A family group selfie of Jacob, his brother and parents smiling at the camera

Jacob was a week away from his third birthday when he was diagnosed with type 1 diabetes. Six years later he was also diagnosed with autism.

When Jacob was diagnosed with type 1, his mum Danielle spotted the danger signs quickly. She explains: “He was drinking and going to the toilet a lot. His night nappies were wet through within about two hours of putting him to bed.”

Danielle sought prompt medical attention at the GP, which led to a diagnosis and urgent transfer to hospital.

As he got older, it became apparent that Jacob needed assessment for autism. He received his diagnosis at the age of eight.

The impact of autism on type 1 management

Jacob’s autism means that he faces challenges with over-sensitivity to touch and extreme anxiety. Danielle, says: “It’s really difficult because the diabetes and the autism do affect each other but they get treated as separate conditions.”

The sensory element of Jacob’s autism causes him to be hyper-sensitive to touch. His clothes are carefully chosen so as not to have cuffs or seams that he would find uncomfortable. When he was diagnosed with type 1 in hospital, Jacob found the needles, cannula tapes and plasters particularly difficult to experience.

“I remember having to hold him while they tried to take blood. It was rough and I think it caused trauma subconsciously,” says Danielle. “His autism means he has fears of hurting himself, fears of heights and injections. He wasn’t injecting himself until he started high school. He also has a lot of anxiety around blood tests.”

Getting used to new tech

Using a flash glucose sensor has made it easier for Jacob and Danielle to track his blood sugars but has brought new challenges, as he finds the sensor changes so distressing. When Jacob first got the flash sensor, the hospital training session was particularly difficult. In a small room with other children learning to use their equipment, Jacob became increasingly anxious. Danielle says: “He doesn’t verbalise that anxiety. I clipped the sensor on his arm and he just lost it.” Jacob was so distressed that Danielle had to take him home.

Jacob is getting used to the flash sensor and it helps with school life, as Danelle explains: “If Jacob has low blood sugar at school, there is a risk that he’ll shut down, so rather than raise the alarm in front of his classmates, he doesn’t talk to people and he just puts his head on the table.” However, with the flash glucose app, Danielle can see if Jacob is hypoglycaemic and can call the school nurse to attend to him.

Advocating for Jacob’s needs with the school has been stressful for Danielle. She says: “That first year actually almost destroyed me.” Difficulties included the school pushing to reduce the number of supervised, blood glucose checks outlined in Jacob’s care plan. An incident had to be addressed after “Jacob walked home from school in hypoglycaemic shock because nobody had checked him at the end of the day.”

A momentous haircut

All these challenges have not deterred Jacob from trying to make a difference and raise funds for JDRF.

A haircut presents a significant challenge to someone with the characteristics of Jacob’s autism. The bright lights, crowds and noise of a salon are overwhelming. The pandemic lockdowns provided the perfect excuse to avoid a professional haircut and Jacob grew a magnificent mane of hair that reached to the middle of his back. When Danielle and Jacob decided it was time for a chop, that’s when they came up with the idea for their Go Fund Me – ‘Cutting for A Cure for Type 1’.

Jacob particularly wanted to help other children with diabetes and felt “it made the haircut a bit more worthwhile.”

So far, they have raised over £500 for JDRF and his hair has been donated to the Little Princess Trust who provide free, real hair wigs to children who have lost their hair through cancer treatment.

Danielle and Jacob are proud that Jacob took this big step out of his comfort zone, “he did something he didn’t particularly want to do and managed to do it for a good cause,” says Danielle.

Jacob had a confidence boost when he returned to school with short, styled hair after half term. Danielle says “everyone was saying he looked amazing.”

Raising awareness of type 1 and other conditions

Danielle feels that better awareness of type 1 diabetes and other childhood medical conditions would be helpful. “People don’t like talking about children that have life threatening conditions. With type 1 everyone just thinks it’s an injection here and an injection there. But with more and more children diagnosed it should be spoken about. If we educated the children and the people around the children, think of the positivity it could lead to later in life.”

Education and awareness could help encourage more children to take on challenges like Jacob did when he got his hair cut. Danielle says: “There are millions of children out there with conditions that they shouldn’t be ashamed of.”

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